Yes, We Are NICHCY - Let the Official Blogging Commence!

It's time to share a little secret. We, the AccessAbility bloggers, are actually the staff at the National Dissemination Center for Children with Disabilities (NICHCY).

(Gasp! Sigh!)

Yes, it's true, we've been hiding behind the curtain. But we've had good reason!

We've been developing this blog as a bit of a test run. We wanted to see, on an experimental basis, how a blog would help with our mission of dissemination. We also wanted to see how we, as a government funded project, could navigate between our desire to build conversation around special education issues, and our concern that material presented on our site maintain our high standard of authority, legitimacy, and accuracy.

We've found the blog to be so valuable, that we've decided to make it official! So we've integrated our blog (now simply called, NICHCY Blog), into our brand-spankin' new NICHCY web site!

Thanks to all of you who have helped us learn from this experience! This is not goodbye. It's a brand new start!

Come see us at the NICHCY blog.

Same bat time, same great bat content. Just a different bat channel.

Parents take over the blogosphere

I really want to know more about what it’s like to be a child with a disability so I’ve been keeping my eyes peeled for blogs posted by children/teens/young adults with disabilities. NICHCY (the National Dissemination Center for Children with Disabilities) has a special section on their website just for kids with disabilities and one page provides links to a number of pen-pal webpages where kids with disabilities can connect with one another. Unfortunately, none of these sites publicly give voice to children’s varied and valuable experiences. Can anyone point me in the right direction?

The next best thing is looking at what parents are saying on the web. Many parents feel some isolation because the special needs of their child take them away from usual face to face social interactions with those in their home communities. But it seems that a lot of parents are getting great use out of blogging because it’s a community they can tap into 24 hours a day, 7 days a week. The other day I read about Contact a Family, a charity in the U.K. that is connecting parents of children with disabilities through sites like Facebook, MySpace, and Second Life (Speaking of which, does anyone know of any disability organizations like this in the U.S.?). It stated that in fact, “mothers, who are often the primary carers for children with disabilities, are now among the biggest users of social networking sites,” because they can share their stories and support one another.

In this online community of support, parents get to authentically voice their own experience and that of their children. For example, I found Elisabeth’s mom who blogs about raising her 14 year-old girl diagnosed with cerebral palsy. I really enjoyed a recent post describing the transition of her daughter from child to teen. Check out this excerpt:

“From her play stuff to the stuff she wears, we're easing into "teen hood" slowly getting rid of the "baby stuff." Her habits, preferences, or her growth chart hasn't changed much since she was 7 or 8 years old so a lot of the stuff isn't age appropriate. What has changed is her taste in music. She loves drums, guitars, and shakes her head to the rhythm of songs she really likes.”

Elisabeth’s mom also shares with readers her own personal fears for her daughter as she gets older, fears which many other parents of children with disabilities likely experience:

“We're talking about a fear we have that what is rightfully theirs will be taken away….We fear they will be seen as a burden or an object of pity. We fear people who will not treat them "wholly" or begin making decisions on their behalf like they did with Terry Schiavo.

How will they know my daughter climbed Half Dome in Yosemite or packed through Many Glacier and saw a Grizzly? How will they know she camped on Assateague enduring a million hungry mosquitoes just to hear the ocean roar at night under an evening sky crowded by twinkling stars. Will they care that she felt a stingray brush up against her ankle near the equator or sat in photos with the local celebrities? Will they know that making bubbles in a pool makes her laugh hysterically and sad music makes her cry? How will they see her for who she really is?”


Parents are able to be powerful advocates for their children, especially within the education system, and many are speaking up about their concerns. Elisabeth’s mom has a valuable commentary on the debate over mainstreaming vs. warehousing children with disabilities. She says,

“not all children benefit from mainstreaming, but this information is not presented to parents. In some cases, mainstreaming in the classroom has actually interfered with the individual child's special education progress. Unfortunately, because there are no alternatives for children or because these alternatives are not supported by the school district what most children settle for in the form of the mainstreaming theory has turned out to be nothing more than babysitting services or "warehousing" their child's needs until the school day is over.”

Jodie Reimer, who blogs about the day to day of raising her son with down syndrome, has a post on what an IEP is and readers’ comments are very telling as to how most parents feel about the current process.

“Here it is in easy-to-understand, non-government speak:
It is a meeting that special education students have once a year. Everyone who gives services to the student is generally in attendance: teacher, physical therapist, speech pathologist, occupational therapist, and many more. There is usually also someone there representing the school district, parents, school psychologist, could be just about anyone (parent's attorney?)At this meeting a document (contract?) is created which spells out what the IEP team would like the student to learn. It has goals and objectives. Blah, blah, blah.IEP meetings can be very intimidating, especially if you are the only one wearing jeans.Anyone else want to add their input?”

JoeyMom, who shares her personal tales of raising her 3 children, one of whom is autistic, wrote a humorous post about IEPs. Here are some excerpts:

"Being a parent at an IEP meeting is kind of like being a passesnger on a plane. Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under the seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You make sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem. However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight…The pilot won't set course or work the instruments unless you specifically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see front the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do and exactly when. Oh, and your flight is already departing from the gate. And if you don’t do all of this correctly, of course you will crash. Oh well, sucks to be you.
Parents have a unique and invaluable perspective on the public education system and how it is or isn’t meeting their child’s special needs. I wonder to what extent researchers and evaluations of the current special education system are taking into account the parents’ viewpoint?"

I have yet to create my own “blogroll” listing my favorite parent blogs so far, so take a look at what Matt of the Beach Center on Disability has compiled on his blog.

Understanding the IEP Process, Part II

My recent post on the IEP process has generated some interest. For more info and resources on this topic, check on this post at InsideSchools.org.

Parents of infants and toddlers will also want to check out this post from the Beach Center, to understand their right to a “line-item veto” of services.

Life with Asperger’s provides a great example of how parents can set up the IEP to draw on their child’s strengths and assist their weaknesses and a link to a sample IEP at Smelena’s Asperger's Blog.

Understanding the IEP Process

One of the most common concerns I hear from parents is that they feel uninformed about what their child’s school is doing to address their disability. They don’t understand that they have the right to be involved in the IEP process, and how to go about getting involved.

Ironically, these parents are often very involved in their child’s schooling in other ways: They’ll bring in cupcakes for a parts or go on a class field trip, but they don’t know what instruction their child is getting.

Part of the problem is that many parents are culturally habituated to treating the school as an unquestionable authority. They don’t understand that they have a right to express their own perspectives of the child’s needs.

Gavin Pollard provides this warning on his blog, Life with Aspergers:

“A warning: Parents, do not approach the IEP meeting as if it were simply a normal school meeting. It's a critical and legal part of your child's education. You need to get it right.”

The IEP process, far from a top-down directive from the school to the family, is a series of negotiations between the two parties For instance, if the family brings in a report from a specialist, the IEP team should take that into account. The school, meanwhile, should bring in broad interdisciplinary perspectives from the many staff members who have contact with the child. In this way, the IEP process is designed to get as broad and deep an understanding as possible of the child’s needs.

It all comes back to understanding the basics of the IEP process. A good place to start is the National Dissemination Center for Children with Disabilities (NICHCY). They’ve got all kinds of resources on how to prepare for the IEP meeting, how to advocate for your child, and how to follow up to ensure the plan is being put into effect. LD Online also has some great resources.

There are tons of parents out there with similar concerns, and the blogosphere is a great way for them to share information. Here are just a few of the many blogs by parents going through it:

• Katy Dickinson
• News from the Boston Becks
• Faith and Parenting

You might also want to check out the School Psychologist Blog Files.

I'd love to hear from anyone else who knows of good online resources for the IEP, and from any other parents who are going through the process.

Disability Blogosphere, continued

Ekc writes --

"I think you raise a lot of interesting questions here. In terms of how "normal" and "disability" are defined, I think a lot of this is based on stereotypes and people *think* to be the societal norms. I think a lot of people don't realize how many varying disabilities there are out there, or even the concept that everyone, PWD and AB, are, despite their differences, just trying to live and enjoy their lives to the fullest. Just a few thoughts."

Ekc also writes a blog for disaboom, a terrific social networking site for people with disabilities. The post about the Medical Marijuana TV ad was particularly strong. I honestly had no idea medical marijuana had such strong pain killing properties. I thought it was only for cancer patients to overcome nausea!

To answer your question, Ekc, I love disaboom's approach, though it's so big I haven't had a chance to look at everything. Can you recommend a few of the best blogs (aside from your own, of course) and resources?

Disability Blogosphere

Like I mentioned in my last post, I'm exploring the “blogosphere” to see what's going on in the lives of people with disabilities (or PWDs as some say) and the PWD communities.In the next few posts I'd like to reference some various sites that offer some insider views into this community. But first let me share with you my overall reaction to what I've found while surfing.

We don't live in a black and white world where there is a fine line between disabled and non-disabled (or “normies” as some bloggers identify them) experiences. The lives of all people are extremely deep, complex, and colorful. Nevertheless, I've noticed at least two different approaches to perceiving/representing/discussing disability and the people with them.

One perspective works from the assumption that PWDs lives are successful and fulfilling to the extent they are integrated with mainstream society and follow its standards of success. The Paralympics is a perfect example of this: Participants compete in the same sports played by non-disabled athletes, with adjustments to rules and some equipment to accommodate the particular disability. Success, or winning, is measured much in the same way that “regular” athletic events are measured. Who is the fastest? Who can score the most baskets/goals/points? The celebration is in overcoming the barriers presented by disabilities and human limitations in general. PWDs with this perspective are not necessarily ignoring their physical challenges, but they do work to live their lives positively and this results in notable achievements that break mental and physical limitations assumed for them. From the perspective of a “normie,” interaction with a PWD with this viewpoint is very smooth and conflict-free, because the disability is downplayed. We (the “normies”) get that happy feeling of, "Hey, he/she is not that different from me...we have a lot in common." This assumes, of course, that normies represent the normal standard of looks, speech, thinking, actions, etc.

The second approach to representing disability contrasts starkly with the one described above. The traditional ways of discussing disability with political correctness are thrown out the window and writing can be any combination of blunt, bitter, sarcastic, angry and in some cases, quite funny. For the normies who prefer interactions like the one finishing off the last paragraph, such an attitude may be quite off-putting and offensive. Nevertheless, this approach allows for straight talk about disabilities from the uncensored, "unnormalized" perspective of PWDs. To get a quick idea of what I'm talking about, look at Ouch!, which demonstrates this approach to the "t."

While exploring the two approaches a few questions come to mind and I'd just love to hear your thoughts on them. Additionally, they serve as a mental warm-up that can inform you as we continue this discussion in upcoming posts.

• How is 'normal' defined (in western society we'll say)? What groups determine it and who or what socio-political factors maintain that definition?
• How is disability defined? Is there/should there be a hierarchy of disability? In other words, is someone's worth and ability determined by how closely their condition matches a non-disabled person?
• How is success determined? Is it determined by PWDs or non-PWDs? And is one more valid than the other?
• Is there ever a time when one can be not disabled enough?
• In many ways, PWDs are adjusting their identities and lifestyles to fit with mainstream society. To what extent should non-PWDs consider and work to adapt to the identities and lifestyles of PWDs?

Living With Autism

As someone without a diagnosed disability (though I'm sure I have quite a few undiagnosed ones!), it's hard for me to imagine what it's like to live with one. It's ironic, I suppose -- I spend alot of time and energy writing about "disability," -- digesting academic literature, writing grant applications, editing publications for teachers and public consumption, etc. -- but I have very little contact with people who live with the conditions I'm writing about.

So I've been looking around the blogosphere for those voices. Turns out, there's a vibrant community of bloggers, and some of them are truly extraordinary. There are quite a few bloggers with autism for instance, and many of them also post films to YouTube. My current favorite is Amanda Baggs, who blogs at Ballastexistenz and posts incredible videos to YouTube as silentmeaow.

Here's one of her creations:




It's also interesting to see the discussion and responses to her videos. Some people are totally moved. Others just don't get it.

I'll keep looking around for other voices like Amanda's. I'm interested to hear about anything else you all know about.

Responding to Eduwonk's Zachary and RFK

Dear Eduwonk,

I wanted to share my thoughts on your post about Zachary. I was truly moved.

I would like to start by saying I find it both timely and important that you share a story of grassroots political activism on a day you had planned to write about Kennedy, Obama, and education. The mother in your story showed up at the meeting to take an active role in making our educational system fairer and more just for all students. It was not an act of grandstanding or “theater,” but rather an ethical act of hope that through her words, policy may be informed by the very people who it affects. The picture you paint of a woman waiting to be heard with a sleeping child in her arms is a poignant image of justice-seeking—a quiet reminder for all in the room about the connection between laws and life.

A few words about Zachary’s legacy…Simply based on this story, I know the effect he had on the world was great. As his mother shared their story that night, people heard. The busy, tired, and perhaps cynical leaders of the meeting looked out across the room and thought more deeply about the decisions with which they were confronted. Zachary changed the world by his example.

We are all asked to be as involved, like Zachary and his mother, in creating the educational system we want for our children.

Thank you for sharing his story.

Access Additive

Thanks to Julie for suggesting a look at Ira Socol's blog, SpeEdChange. I loved the post from June 2. It's so true: You never create access for a deprived group by denying access to anyone.

I'll definitely keep an eye out for SpeEdChange from now on.

Autism -- How to know what works?

On Friday, “Autism_Mom” wrote:

“I've come across the Shafer Autism Report which seems to have lots of information on Autism - problem is I don't know how much of this info is based in good research. Seems like a lot of people slap "research-based" in front of whatever they're selling - how do I really know if it works?

It's true -- determining the quality of information on autism is tricky business. Even the Shafer report states they are not endorsing any treatments or providing any medical or legal advice. How frustrating!

How to start… Be a voracious reader, gather all the evidence you can, and seek the advice of the professionals. Remember that nobody knows your child better than you do, so pair your knowledge with professional understanding. Ultimately your knowledge of your child should form the foundation of the approach you take. An About: Autism Spectrum Disorders posting from 2007 made this same point:

“As you start to dig deeply into the literature on autism treatments, you'll find dozens of available options. Which are the "best" treatments? As the professionals will tell you over and over again, every child's needs are different.”

Still it’s worth taking a look at the list on that blog, which includes “what’s most likely to be offered and/or available.” You might also check out this discussion at Dr. Chris’ Autism Journal.

Hope that helps!

Into the Deep Water -- Autism

James Mulick, professor of pediatrics and psychology at Ohio State University says “there's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”

Autism is certainly one of the most mystifying and challenging disabilities for both researchers and practitioners. With so many “fad” treatments popping up every day, how can parents, administrators, and teachers know where to find an effective, research-based intervention that will actually help a child?

Mulick, who chaired a symposium on “Outrageous Developmental Disorder Treatments at the American Psychological Association annual meeting last year, says Early Intensive Behavioral Intervention is the only therapy shown to have long-term positive effects.
As Mulick said in this article in Ohio State’s Research Communications, “EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.”

So with so many “snake oil” solutions out there, and only one legit approach available at an astronomical expense, where can educators and parents turn for information?

I’ve found a couple of places to turn, but I’d love to hear from others who have experience swimming in these waters.

Here’s what I’ve found:

• Educating Children with Autism and Pervasive Developmental Disorder. www.autismweb.com/education.htm
• Educating Children with Autism. www.nap.edu/catalog/10017.html

Has anybody used these resources? What did you think of them? Have you implemented a research-based program effectively? What made it effective? If it wasn't effective, why not? If you're a parent, have you found any particularly successful strategies?

Jumping into the breach

I’ve been searching all over the blogosphere for discussions of research-based special education interventions – to no avail! I’m sure there’s discussion going on all over the place – on closed discussion boards, group emails, or even in coffeehouses.

Still, it would be nice if there were something were we could all talk together, about what the research on special education says, and how it impacts children’s lives in our classrooms and homes.

There’s a broad discussion of special ed going on within the general education blogosphere. Some of the best I’ve come across include Bridging Differences (where Dianne Ravitch and Deborah Meier discuss all things educational) and Eduwonkette (who has a great blogroll).

There are also several blogs that cover special education law, such as The Wrightslaw Way.

But we need a place for conversation about what happens in the classroom, and how research can inform that practice. My hope is that this blog will draw together all the conversations that already exist and create new opportunities to learn from each other.

Wadda y’all think?